LJ    
When my son Loudon Jack (LJ) was born I could picture his future.

I could picture our new family of four taking trips, our two boys growing up together— playing and fighting as brothers do. That picture started to change when LJ was just two weeks old and started breathing fast, over 100 times a minute.

Despite trips to the pediatrician and Emergency Room, being seen by multiple specialists at a world-class hospital, it would take months filled with scans, surgery, biopsies, and endless worry to finally get a diagnosis for LJ. At only two months old LJ had tumors filling his lungs as well as a lesion in his brain and a tumor wrapping around his spinal cord. These tumors were Systemic Juvenile Xanthogranuloma (JXG), a rare kind of histiocytosis. Further testing revealed that LJ was only the fourth documented case of this specific kind of JXG and the first to have it in the brain or spinal cord.

The bright future I once pictured for LJ was fading, instead replaced by the nightmare and confusion of histiocytosis. There was no established treatment for his rare diagnosis and hardly anywhere to turn for support or education. With my three-month-old son facing toxic chemotherapy treatments and an uncertain future, I turned to the Histiocytosis Association.

LJThrough the Histiocytosis Association, I was able to learn more about histiocytic diseases and reach out to histiocytosis experts across the country that helped weigh in on LJ’s treatment. I was able to connect with other Histio Warriors and their families. Their support gave my family hope and the courage to keep going despite the uncertainty.

LJ is now two years old and still facing six more months of treatment. Despite all he has endured, he is happy and thriving. He is living life despite systemic JXG and I can once again picture a future for him.

This year join me in picturing a cure for histiocytosis. Picture a future where histiocytosis is well understood and easily treated, a future where three-month-olds don’t need chemotherapy.

Picture a cure for histiocytosis so kids like LJ can picture their future. Donate Today.

Alena Furhman
Histio Mom

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